newly diagnosed...

[Guest guest]

In a message dated 03/10/02 8:15:16 PM Central Standard Time,

dgmiddle@... writes:

> Does anyone have any suggestions where to go from here since I am

> still experiancing numbness/tingling in my hands, toes and lips??

>

Dave,

I am not familiar with the candida test you mentioned (I have had a candida

antibody blood test, but the results only say positive or negative and give

no point value). I have also had a stool test that showed I had high levels

of candida, but many people who have overgrowth will show a normal balance on

the stool test. So, in this case, symptoms often outweigh test results.

Since you had tingling in the extremeties, did you doctor clear you of any

neurological disorders? What did he attribute this problem to? If I were

you, I would definately seek out another dr. I, too, have tingling, but only

in my legs, and only after sitting in a certain position for a few minutes or

more, but I have lupus and this is to be expected.

My PCP didn't bother to test to find out what was causing this and he just

dismised it (along with a ton of other symptoms I had). I even saw a

naturopath after this, and while he asked me if I thought I might have lupus,

I said I didn't know. So, he too didn't bother testing! Finally, I found a

dr. who did test and confirmed what I had come to believe I had. I'm not

saying you have lupus, please don't misunderstand this. What I am saying is,

you need to find a dr. who is willing to find out what is causing this.

The way I found my dr. is I called Great Smokies Lab (a lab often mentioned

in candida books/sites) and asked for a referral in my area. From there I

asked around at a health food store and the dr. I chose came highly

recommended. I had seen another dr. that uses this lab but he was the one who

didn't test for lupus even though he asked me about it, so that is why I say

ask around once you get a name. Here is the link to Great Smokies : <A

HREF= " www.gsdl.com/ " >

www.gsdl.com/</A>

Hope this helps,

Annette

[Guest guest]

Hi ,

I'm quickly trying to

learn all I can about disease/disorder (which is it?). Does anyone

know of any good sites I can visit for more information?

Here are the three I recommend:

www.thyroid.about.com

www.wilsonsthyroidsyndrome.com

http://home.usaa.net/~wurmstein/#QUEST

I also have

another question: I've been obese my whole life. Now that I've begun

taking 100mcg of synthroid, will this help me drop a few pounds?

IMO, it is very important for each person w/ hypothyroidism to find the right medicine for them in the right amounts and take it in the right way at the right time. Synthroid might be the medicine for you and it may help you lose weight. Each person is different. I didn't find synthroid helped me. I needed a different medicine but once I found it, started Weight Watchers, and increased my daily exercise, I have been able to lose about ten pounds. Other people here have been able to lose weight while taking synthroid. Celeste, in particular has been able to get good results with it and some other interesting things she's doing; I'll let her tell you about them.

If you don't get immediate results, hang in there. Try to experiment with yourself, your eating, your exercise, and don't be afraid to ask your doc to tweak your dosage or change your meds until you find what works for you.

Good luck and good health!

in LA

"The fact that an opinion has been widely held is no evidence whatever that it is not utterly absurd."

Bertrand (1872 - 1970)

[Guest guest]

Now that I've begun taking 100mcg of synthroid, will this help

me drop a few pounds?

Hi - welcome

I am on 100 of synthroid as well and I have been on it for 6 months. I have

not lost weight, but have definitely had more energy to exercise and I

believe it's all cyclical. My dr. recently started me on T3, which helps

with weight and depression, but then I got pregnant, and she wanted me to

come off of it b/c my TSH actually went up.

_________________________________________________________________

Join the world’s largest e-mail service with MSN Hotmail.

http://www.hotmail.com

[Guest guest]

--Welcome Kieth. I like the friendly fire analogy for our autoimmune

illnesses. What part of Europe is your small town in? I am in the

U.S. and haven't travelled abroad alot. Good Luck with everything!

Marti

[Guest guest]

Hello :

Welcome to the site, I'm fairly new myself (just been with the group for two

weeks or so). Yes, all your conditions come from one source. From what I've

read about psoriasis and what rheumatologists have told me, it can affect skin

(can start like a pustule or red patch that turns into a thick patch with white

scales called plaque), joints (tumor necrosis factor), intestinal inflammation

(can be diagnosed as diverticulitis), nail tissue (my nails looked like someone

took a needle and poked holes in them), clinical depression (from dealing with

chronic pain and a condition that doesn't seem to go away but get worse), etc.

All of these conditions affect me and the worse thing I did for myself was to

ignore it and just do NSAIDs over the counter, even after diagnosis (part of my

depression is to ignore things). Everything that is happening comes from the

inside out--topical treatments only started working for me when I started taking

Remicade w/small dose of Methotrexate--my insurance will not cover Remicade

unless my rhuemi also prescribes Methotrexate (MTX). How I mentally deal with

constantly having to take medications and looking at taking them for the rest of

my life, is to think of diabetics who always have to take insulin or someone who

has manic depression who will always have to take Lithium--because the body does

not produce the correct chemical balance to make the body work normally, the

only choice is to seek medications that keep the body in balance. Sometimes

with Psoriatic Arthritis, the medications can help the body to go into remission

of the PA but you have to take them for this to happen. I have heard from

people who take " natural " remedies that keep pain at bay and some of the

plaquing at bay but have not heard whether their condition has gone into

remission or is not progressing. In my case, the progression of the disease is

clear--without medications I have really bad skin patches that scale and shed,

and joints that fuse together and are painful. I honestly thought I was looking

at being in a wheel chair within five or six years before I started on the

Remicade. I do not have the option of being a purist when it comes to

medications if I want to lead a fairly normal life. I think that when people do

not treat their PA and PS utilizing prescribed medications, I believe they are

in denial of how serious their condition can be (I know there are many that will

argue this point) and why put yourself in that position of having many fused

joints and lots of pain when one can control the disease early on. Use both

barrels of the shot gun baby! I like what one of my Rheumatologists told me a

few years ago--so what if you identify what may have been the catalyst in

causing your condition, excluding that from your diet, changing what stresses

you out, etc. may help to ease symptoms but that will not necessarily put the

condition into remission (he had never seen that happen in his 30 year career as

a rheumatologist--this rheumi ran a fibromyalgia clinic as well as treating PA,

RA, OsteoA, etc.). Although, understanding diet helps--certain foods contribute

to inflammation like high sugared foods and alcohol--alcohol also contributes to

dehydration, etc.

Do you love yourself? If we love, we care. If we care, we do. We do whatever

it takes to care for what we love.

Read more about the condition and its effects over time. I still enjoy a glass

of red wine but only once or twice per week (with rheumi's permission) and enjoy

chocolate (candy or cake) but include that as my carbohydrate/sugar for the day

and eat very healthy the rest of the day (vegies and protein).

Take care and thanks for sharing, my bag is outta gas for now :-).

Sally in Grass Valley

[ ] Newly diagnosed...

Um...this post was originally written/sent to Psoriatic-Arthritis,

which is a far smaller group here at . Then I discovered this

*huge* community and joined (without email service...too much!), and

thought I should post it here too if anyone cares to read all this

rubbish. I'll try to come back and visit when I can.

Hey Folks...

Just came to the list with only a quick search. I see that new

folks are joining quite often, and sometimes ask for fairly

basic information. In other groups I've joined, often a

contingent of the most experienced 'veterans' have gotten together

and written up a FAQ-like document of oft-repeated info and

such. I didn't see one here in the Files section or other, and

the 'welcome' message that I got for joining the group didn't

point one to such a document/site either. No matter. Eventually

I will discover what I need to know I suppose.

So, in lieu of asking questions you've all heard before, I guess

I'll tell the 'story' 'cause people seem to like hearing stories

that they can relate to. FWIW. Well, I would have started about

two years ago, but now I'll go back to three years ago instead,

based on what I've seen just today. Then (Y2K), at the age of 36,

I had developed a minor problem with my right knee during my

usual training program (which was comprised of 3-4 runs a week of

2-5 miles per run, but at a fairly quick pace, up to as fast as

6 min./mile or 4 min./km). Ten years earlier, I had overtrained

once and developed a significant problem with a hip tendon that

put me out of action for the better part of a year. That eventually

healed completely and I went on to run a marathon in about 3:15,

so...

So of course, it had seemed to me that I had simply overworked my

legs, even though I was hardly going through a rigorous routine

(nothing over a 10K even). I simply thought, well I'm finally

discovering that my body is no longer so indestructable. One

strange thing during this time is that I was also experiencing a

sudden hypersensitivity to the foods I ate in the hours before I

went out to run. Or at least I thought so. Earlier in my life,

I was always able to eat whatever I wanted and it never caused me

any problems during my exercise. But I even did tests to remove

certain things from my diet completely to see if I was developing

a food allergy. I did one week with no dairy whatsoever, and

another with no gluten (wheat), and there was no change. No clue

if there was ever anything to it, or whether I was just imagining

the whole thing (psychosomatic or whatever one calls it). Oh,

and another thing...once around that time, and once again just

this spring, I had weird isolated sinus allergy attacks (that lasted

up to 12 hours or more) after a particular run. Again, something

I'd *never* experienced before...still don't know what that was all

about.

Now move forward about a year or so...my knee got slowly better

but I never felt confident enough that I could start training again

(never pain, but just an odd suspicion of weakness, esp. on stairs).

But then (and in no way would I have ever thought to connect these

things!) I started getting funny things on my fingernails. Don't

really need to describe this I guess, but it would come and go,

affect one-at-a-time, or three-at-a-time, whatever. Eventually

the toes joined in, and by now I've got it on 19 of my 20 digits

in various stages of progression. During the period of ~2 years

between then and now, I had tried lots of different strategies and

things to kill the presumed 'fungus' that was terrorizing my nails,

but it never seemed to have any lasting effect. I don't really

like visits to the doctor very much (who does?), so it had to get

*really* bad before I took that action. Last year, I moved from the

US to Europe and thought my nails would improve once I got away

from my old apartment and " contaminated shower. " But it " followed "

me here. Guess I re-contaminated my new shower then? (Wrong, of

course.)

Then last winter, I came up with a new thing...terrible scalp

flaking and giant red spots on the skin around the hairline and

around the ears. Again, couldn't put them solidly together and

figured the difference in onset by over a full year must mean that

they had separate causes. Came up with a self-diagnosis of

seborrheic dermatitis and bought a 'cocktail' of different medicated

shampoos like coal tar, salicylic acid, nixoral, etc. and rotated

them day by day as I saw they were rather harsh to use every day.

*Maybe* a bit of improvement after one month of this, but absolutely

no miracle cure. The scalp condition continued and then even

worsened. OK, finally I go to a dermatologist. After the second

visit, the fungus idea is rejected and the word 'psoriasis' is

offered to me. Of the nails I ask? Never heard of such a thing,

only the scalp part. She tells me it's all one root cause. Not

even an infection, but something 'chromosomal.' Hmm...

Soon thereafter I mention that I sometimes have stiffness in one

or two digits of my hand, often when that finger has a funny ridge

developing at the base of the nail. The pattern had just become

recognized to me recently. Immediately she says arthritis (although

it was only the third try that I understood her...the accent, not

denial on my part!). Her advice is to go see a Hausarzt (GP) if

and when my arthritis becomes painful enough to affect my quality

of life (paraphrased), to have x-rays and consider various treatments

some of which can be rather invasive (I gathered from her tone).

Since then, I tried to learn more about it on my own, and think it

prudent that I just go now. Here in my small town there are oddly

a lot of rheumatologists (or whatever the right word is), since I

live in " Kurort " town in the old country, where hot springs are

plentiful, and people have come for many centuries to have various

maladies magically cured by these " Quelle " .

Apart from my chronic knee trouble (which of course I can't really

be sure about), the arthritis is only just kicking in, I believe,

as I have one finger with a funny growth on the side (sensitive to

the touch, but not affecting motion), and now my left thumb has just

in the last two weeks started to become problematic. Also, my one

pinky toe has suddenly swelled up and turned pinkish. On the other

foot, my two middle toes have been sore for a long time, which

I (in retrospect) misattributed to a injury caused by running. My

bad knee made me quit again...*one* cool night in shorts did me in.

I think I read somewhere that PA is really nothing but one's own

immune system failing to recognize that it's attacking what *was*

perfectly healthy tissue. My immediate thought was, " Great, I've

got a 'friendly fire' situation here inside my own body. " And because

my suspicion is that a condition like this can 'cross over' many

different internal functions, I can see now that perhaps every one

of these peculiar incidents are all connected to a single root

cause. (But I don't know about the stuff with the food and pollen

sensitivities...thought I'd throw that in there to see if anybody

had any light to shed on that topic.)

Well, I will now choose a local clinic that can help me track the

progress of my PA with xrays or whatever, and perhaps start the

least-aggressive method of treatment. I hate to think of going

on a strict diet, as I have little willpower in that direction, but

I will try my best if I'm repeatedly told it will likely make a

tangible difference.

So, thanks for listening, and if you have any suggestions about

what things I should absolutely not forget to ask during my initial

consultations with the 'new' doctor, I'm all ears. I guess I'm

done for now with the dermatologist...the corticosteroids (is

it?) that I used for several weeks significantly improved my

scalp condition, and now she's given me Vitamin D-derived cream

for that and also my fingers and toes. Don't know if that will

work, but at the moment, I care very little about my skin/nail

problems. To me, those are just cosmetic and I'm not bothered by

that aspect at all, but was rather just tired of having to spend

so much time cleaning up the mess around all my nails all the time.

And scratching my head half the day. What's now of critical

importance is all of my joints obviously.

Well, that's enough for now.

P.S. I come from a big family with five older siblings. I don't

think any of them have this. My mom (71) has had arthritis for

about a decade, but I think that's just the 'normal' kind.

Presumably, though, this should run in families?

[Ed. Note: , I suggest you join the National Psoriasis Foundation (NPF)

and read all the information about psoriasis and PA on their website. They also

have lots of booklets that you can order for free. The NPF website is at:

http://psoriasis.org/ Ron]

[Guest guest]

I guess I found a little more gas in my bag. I am the youngest of six siblings

with one sibling being my fraternal twin and I am the only one so far with PA.

My mother had psoriasis that she got under control a few years ago. My

understanding is that it can be progressively worse every generation. I worry

about two of my nephews as my brother married a woman whose sister has really

bad psoriasis on her skin (and luckily it has not expressed itself as PA so far)

but my nephews now have the gene from both families. Hopefully, they'll be

O.K.--no symptoms yet :-)!!.

Later gater,

Sally in Grass Valley

Ed Note While it may sometimes become progressively worse through the

generations I think that it is more likely to become progressively better ie

non-existent because most cultures have no incidence of psoriasis. Natural

selection? You might search for demographics of psoriasis. It is really a very

small percentage of worldwide population that is susceptible to psoriasis. As

for your nephews they do have a greater than average chance of having inherited

the gene(s) for psoriasis due to those triats being present on both sides of

their family but it is also quite possible that they didnt inherit it from

either side. Orin

[ ] Newly diagnosed...

Um...this post was originally written/sent to Psoriatic-Arthritis,

which is a far smaller group here at . Then I discovered this

*huge* community and joined (without email service...too much!), and

thought I should post it here too if anyone cares to read all this

rubbish. I'll try to come back and visit when I can.

Hey Folks...

Just came to the list with only a quick search. I see that new

folks are joining quite often, and sometimes ask for fairly

basic information. In other groups I've joined, often a

contingent of the most experienced 'veterans' have gotten together

and written up a FAQ-like document of oft-repeated info and

such. I didn't see one here in the Files section or other, and

the 'welcome' message that I got for joining the group didn't

point one to such a document/site either. No matter. Eventually

I will discover what I need to know I suppose.

So, in lieu of asking questions you've all heard before, I guess

I'll tell the 'story' 'cause people seem to like hearing stories

that they can relate to. FWIW. Well, I would have started about

two years ago, but now I'll go back to three years ago instead,

based on what I've seen just today. Then (Y2K), at the age of 36,

I had developed a minor problem with my right knee during my

usual training program (which was comprised of 3-4 runs a week of

2-5 miles per run, but at a fairly quick pace, up to as fast as

6 min./mile or 4 min./km). Ten years earlier, I had overtrained

once and developed a significant problem with a hip tendon that

put me out of action for the better part of a year. That eventually

healed completely and I went on to run a marathon in about 3:15,

so...

So of course, it had seemed to me that I had simply overworked my

legs, even though I was hardly going through a rigorous routine

(nothing over a 10K even). I simply thought, well I'm finally

discovering that my body is no longer so indestructable. One

strange thing during this time is that I was also experiencing a

sudden hypersensitivity to the foods I ate in the hours before I

went out to run. Or at least I thought so. Earlier in my life,

I was always able to eat whatever I wanted and it never caused me

any problems during my exercise. But I even did tests to remove

certain things from my diet completely to see if I was developing

a food allergy. I did one week with no dairy whatsoever, and

another with no gluten (wheat), and there was no change. No clue

if there was ever anything to it, or whether I was just imagining

the whole thing (psychosomatic or whatever one calls it). Oh,

and another thing...once around that time, and once again just

this spring, I had weird isolated sinus allergy attacks (that lasted

up to 12 hours or more) after a particular run. Again, something

I'd *never* experienced before...still don't know what that was all

about.

Now move forward about a year or so...my knee got slowly better

but I never felt confident enough that I could start training again

(never pain, but just an odd suspicion of weakness, esp. on stairs).

But then (and in no way would I have ever thought to connect these

things!) I started getting funny things on my fingernails. Don't

really need to describe this I guess, but it would come and go,

affect one-at-a-time, or three-at-a-time, whatever. Eventually

the toes joined in, and by now I've got it on 19 of my 20 digits

in various stages of progression. During the period of ~2 years

between then and now, I had tried lots of different strategies and

things to kill the presumed 'fungus' that was terrorizing my nails,

but it never seemed to have any lasting effect. I don't really

like visits to the doctor very much (who does?), so it had to get

*really* bad before I took that action. Last year, I moved from the

US to Europe and thought my nails would improve once I got away

from my old apartment and " contaminated shower. " But it " followed "

me here. Guess I re-contaminated my new shower then? (Wrong, of

course.)

Then last winter, I came up with a new thing...terrible scalp

flaking and giant red spots on the skin around the hairline and

around the ears. Again, couldn't put them solidly together and

figured the difference in onset by over a full year must mean that

they had separate causes. Came up with a self-diagnosis of

seborrheic dermatitis and bought a 'cocktail' of different medicated

shampoos like coal tar, salicylic acid, nixoral, etc. and rotated

them day by day as I saw they were rather harsh to use every day.

*Maybe* a bit of improvement after one month of this, but absolutely

no miracle cure. The scalp condition continued and then even

worsened. OK, finally I go to a dermatologist. After the second

visit, the fungus idea is rejected and the word 'psoriasis' is

offered to me. Of the nails I ask? Never heard of such a thing,

only the scalp part. She tells me it's all one root cause. Not

even an infection, but something 'chromosomal.' Hmm...

Soon thereafter I mention that I sometimes have stiffness in one

or two digits of my hand, often when that finger has a funny ridge

developing at the base of the nail. The pattern had just become

recognized to me recently. Immediately she says arthritis (although

it was only the third try that I understood her...the accent, not

denial on my part!). Her advice is to go see a Hausarzt (GP) if

and when my arthritis becomes painful enough to affect my quality

of life (paraphrased), to have x-rays and consider various treatments

some of which can be rather invasive (I gathered from her tone).

Since then, I tried to learn more about it on my own, and think it

prudent that I just go now. Here in my small town there are oddly

a lot of rheumatologists (or whatever the right word is), since I

live in " Kurort " town in the old country, where hot springs are

plentiful, and people have come for many centuries to have various

maladies magically cured by these " Quelle " .

Apart from my chronic knee trouble (which of course I can't really

be sure about), the arthritis is only just kicking in, I believe,

as I have one finger with a funny growth on the side (sensitive to

the touch, but not affecting motion), and now my left thumb has just

in the last two weeks started to become problematic. Also, my one

pinky toe has suddenly swelled up and turned pinkish. On the other

foot, my two middle toes have been sore for a long time, which

I (in retrospect) misattributed to a injury caused by running. My

bad knee made me quit again...*one* cool night in shorts did me in.

I think I read somewhere that PA is really nothing but one's own

immune system failing to recognize that it's attacking what *was*

perfectly healthy tissue. My immediate thought was, " Great, I've

got a 'friendly fire' situation here inside my own body. " And because

my suspicion is that a condition like this can 'cross over' many

different internal functions, I can see now that perhaps every one

of these peculiar incidents are all connected to a single root

cause. (But I don't know about the stuff with the food and pollen

sensitivities...thought I'd throw that in there to see if anybody

had any light to shed on that topic.)

Well, I will now choose a local clinic that can help me track the

progress of my PA with xrays or whatever, and perhaps start the

least-aggressive method of treatment. I hate to think of going

on a strict diet, as I have little willpower in that direction, but

I will try my best if I'm repeatedly told it will likely make a

tangible difference.

So, thanks for listening, and if you have any suggestions about

what things I should absolutely not forget to ask during my initial

consultations with the 'new' doctor, I'm all ears. I guess I'm

done for now with the dermatologist...the corticosteroids (is

it?) that I used for several weeks significantly improved my

scalp condition, and now she's given me Vitamin D-derived cream

for that and also my fingers and toes. Don't know if that will

work, but at the moment, I care very little about my skin/nail

problems. To me, those are just cosmetic and I'm not bothered by

that aspect at all, but was rather just tired of having to spend

so much time cleaning up the mess around all my nails all the time.

And scratching my head half the day. What's now of critical

importance is all of my joints obviously.

Well, that's enough for now.

P.S. I come from a big family with five older siblings. I don't

think any of them have this. My mom (71) has had arthritis for

about a decade, but I think that's just the 'normal' kind.

Presumably, though, this should run in families?

[Ed. Note: , I suggest you join the National Psoriasis Foundation (NPF)

and read all the information about psoriasis and PA on their website. They also

have lots of booklets that you can order for free. The NPF website is at:

http://psoriasis.org/ Ron]

[Guest guest]

Interesting how genes work. I have a second cousing with PS, but nobody

else in my family that I know of has it. I was 13 when diagnosed with PA

which was really depressing because neither of my parents have arthritis yet

of any type, and I still have one grandparent without arthritis. It really

makes me feel old!!!

>From: " sallyking " <sallyking@...>

>Reply-

>< >

>Subject: Re: [ ] Newly diagnosed...

>Date: Mon, 1 Sep 2003 14:44:36 -0000

>

>I guess I found a little more gas in my bag. I am the youngest of six

>siblings with one sibling being my fraternal twin and I am the only one so

>far with PA. My mother had psoriasis that she got under control a few

>years ago. My understanding is that it can be progressively worse every

>generation. I worry about two of my nephews as my brother married a woman

>whose sister has really bad psoriasis on her skin (and luckily it has not

>expressed itself as PA so far) but my nephews now have the gene from both

>families. Hopefully, they'll be O.K.--no symptoms yet :-)!!.

>

>Later gater,

>

>Sally in Grass Valley

>

>Ed Note While it may sometimes become progressively worse through the

>generations I think that it is more likely to become progressively better

>ie non-existent because most cultures have no incidence of psoriasis.

>Natural selection? You might search for demographics of psoriasis. It is

>really a very small percentage of worldwide population that is susceptible

>to psoriasis. As for your nephews they do have a greater than average

>chance of having inherited the gene(s) for psoriasis due to those triats

>being present on both sides of their family but it is also quite possible

>that they didnt inherit it from either side. Orin

> [ ] Newly diagnosed...

>

>

> Um...this post was originally written/sent to Psoriatic-Arthritis,

> which is a far smaller group here at . Then I discovered this

> *huge* community and joined (without email service...too much!), and

> thought I should post it here too if anyone cares to read all this

> rubbish. I'll try to come back and visit when I can.

>

> Hey Folks...

>

> Just came to the list with only a quick search. I see that new

> folks are joining quite often, and sometimes ask for fairly

> basic information. In other groups I've joined, often a

> contingent of the most experienced 'veterans' have gotten together

> and written up a FAQ-like document of oft-repeated info and

> such. I didn't see one here in the Files section or other, and

> the 'welcome' message that I got for joining the group didn't

> point one to such a document/site either. No matter. Eventually

> I will discover what I need to know I suppose.

>

> So, in lieu of asking questions you've all heard before, I guess

> I'll tell the 'story' 'cause people seem to like hearing stories

> that they can relate to. FWIW. Well, I would have started about

> two years ago, but now I'll go back to three years ago instead,

> based on what I've seen just today. Then (Y2K), at the age of 36,

> I had developed a minor problem with my right knee during my

> usual training program (which was comprised of 3-4 runs a week of

> 2-5 miles per run, but at a fairly quick pace, up to as fast as

> 6 min./mile or 4 min./km). Ten years earlier, I had overtrained

> once and developed a significant problem with a hip tendon that

> put me out of action for the better part of a year. That eventually

> healed completely and I went on to run a marathon in about 3:15,

> so...

>

> So of course, it had seemed to me that I had simply overworked my

> legs, even though I was hardly going through a rigorous routine

> (nothing over a 10K even). I simply thought, well I'm finally

> discovering that my body is no longer so indestructable. One

> strange thing during this time is that I was also experiencing a

> sudden hypersensitivity to the foods I ate in the hours before I

> went out to run. Or at least I thought so. Earlier in my life,

> I was always able to eat whatever I wanted and it never caused me

> any problems during my exercise. But I even did tests to remove

> certain things from my diet completely to see if I was developing

> a food allergy. I did one week with no dairy whatsoever, and

> another with no gluten (wheat), and there was no change. No clue

> if there was ever anything to it, or whether I was just imagining

> the whole thing (psychosomatic or whatever one calls it). Oh,

> and another thing...once around that time, and once again just

> this spring, I had weird isolated sinus allergy attacks (that lasted

> up to 12 hours or more) after a particular run. Again, something

> I'd *never* experienced before...still don't know what that was all

> about.

>

> Now move forward about a year or so...my knee got slowly better

> but I never felt confident enough that I could start training again

> (never pain, but just an odd suspicion of weakness, esp. on stairs).

> But then (and in no way would I have ever thought to connect these

> things!) I started getting funny things on my fingernails. Don't

> really need to describe this I guess, but it would come and go,

> affect one-at-a-time, or three-at-a-time, whatever. Eventually

> the toes joined in, and by now I've got it on 19 of my 20 digits

> in various stages of progression. During the period of ~2 years

> between then and now, I had tried lots of different strategies and

> things to kill the presumed 'fungus' that was terrorizing my nails,

> but it never seemed to have any lasting effect. I don't really

> like visits to the doctor very much (who does?), so it had to get

> *really* bad before I took that action. Last year, I moved from the

> US to Europe and thought my nails would improve once I got away

> from my old apartment and " contaminated shower. " But it " followed "

> me here. Guess I re-contaminated my new shower then? (Wrong, of

> course.)

>

> Then last winter, I came up with a new thing...terrible scalp

> flaking and giant red spots on the skin around the hairline and

> around the ears. Again, couldn't put them solidly together and

> figured the difference in onset by over a full year must mean that

> they had separate causes. Came up with a self-diagnosis of

> seborrheic dermatitis and bought a 'cocktail' of different medicated

> shampoos like coal tar, salicylic acid, nixoral, etc. and rotated

> them day by day as I saw they were rather harsh to use every day.

> *Maybe* a bit of improvement after one month of this, but absolutely

> no miracle cure. The scalp condition continued and then even

> worsened. OK, finally I go to a dermatologist. After the second

> visit, the fungus idea is rejected and the word 'psoriasis' is

> offered to me. Of the nails I ask? Never heard of such a thing,

> only the scalp part. She tells me it's all one root cause. Not

> even an infection, but something 'chromosomal.' Hmm...

>

> Soon thereafter I mention that I sometimes have stiffness in one

> or two digits of my hand, often when that finger has a funny ridge

> developing at the base of the nail. The pattern had just become

> recognized to me recently. Immediately she says arthritis (although

> it was only the third try that I understood her...the accent, not

> denial on my part!). Her advice is to go see a Hausarzt (GP) if

> and when my arthritis becomes painful enough to affect my quality

> of life (paraphrased), to have x-rays and consider various treatments

> some of which can be rather invasive (I gathered from her tone).

> Since then, I tried to learn more about it on my own, and think it

> prudent that I just go now. Here in my small town there are oddly

> a lot of rheumatologists (or whatever the right word is), since I

> live in " Kurort " town in the old country, where hot springs are

> plentiful, and people have come for many centuries to have various

> maladies magically cured by these " Quelle " .

>

> Apart from my chronic knee trouble (which of course I can't really

> be sure about), the arthritis is only just kicking in, I believe,

> as I have one finger with a funny growth on the side (sensitive to

> the touch, but not affecting motion), and now my left thumb has just

> in the last two weeks started to become problematic. Also, my one

> pinky toe has suddenly swelled up and turned pinkish. On the other

> foot, my two middle toes have been sore for a long time, which

> I (in retrospect) misattributed to a injury caused by running. My

> bad knee made me quit again...*one* cool night in shorts did me in.

>

> I think I read somewhere that PA is really nothing but one's own

> immune system failing to recognize that it's attacking what *was*

> perfectly healthy tissue. My immediate thought was, " Great, I've

> got a 'friendly fire' situation here inside my own body. " And because

> my suspicion is that a condition like this can 'cross over' many

> different internal functions, I can see now that perhaps every one

> of these peculiar incidents are all connected to a single root

> cause. (But I don't know about the stuff with the food and pollen

> sensitivities...thought I'd throw that in there to see if anybody

> had any light to shed on that topic.)

>

> Well, I will now choose a local clinic that can help me track the

> progress of my PA with xrays or whatever, and perhaps start the

> least-aggressive method of treatment. I hate to think of going

> on a strict diet, as I have little willpower in that direction, but

> I will try my best if I'm repeatedly told it will likely make a

> tangible difference.

>

> So, thanks for listening, and if you have any suggestions about

> what things I should absolutely not forget to ask during my initial

> consultations with the 'new' doctor, I'm all ears. I guess I'm

> done for now with the dermatologist...the corticosteroids (is

> it?) that I used for several weeks significantly improved my

> scalp condition, and now she's given me Vitamin D-derived cream

> for that and also my fingers and toes. Don't know if that will

> work, but at the moment, I care very little about my skin/nail

> problems. To me, those are just cosmetic and I'm not bothered by

> that aspect at all, but was rather just tired of having to spend

> so much time cleaning up the mess around all my nails all the time.

> And scratching my head half the day. What's now of critical

> importance is all of my joints obviously.

>

> Well, that's enough for now.

>

>

>

> P.S. I come from a big family with five older siblings. I don't

> think any of them have this. My mom (71) has had arthritis for

> about a decade, but I think that's just the 'normal' kind.

> Presumably, though, this should run in families?

>

>

>

> [Ed. Note: , I suggest you join the National Psoriasis Foundation

>(NPF) and read all the information about psoriasis and PA on their website.

>They also have lots of booklets that you can order for free. The NPF

>website is at: http://psoriasis.org/ Ron]

>

_________________________________________________________________

Get MSN 8 and help protect your children with advanced parental controls.

http://join.msn.com/?page=features/parental

[Guest guest]

In a message dated 9/2/2003 1:42:14 AM Eastern Daylight Time,

sallyking@... writes:

> intestinal inflammation (can be diagnosed as diverticulitis),

Sally,

I would like to know more about what you said here on diverticulits. I had

to have a foot of my colon taken out several years ago because the

diverticulitis was so inflamed and would not heal. This is the first time I

ever heard it

linked to psoriaisis. Can you tell me where you go this information because

I would like to read more about it and research it as well.

Janet

[Guest guest]

In a message dated 9/2/2003 12:54:10 PM Eastern Daylight Time,

goat_46804@... writes:

> Interesting how genes work. I have a second cousing with PS, but nobody

> else in my family that I know of has it

that is so interesting because there is no one in my family with this except

for a second cousin as well. It is my father's first cousin.

Janet

[Guest guest]

There are several in my family with PS, none as severe as mine

though. Not that mine is terribly severe, but theirs is pretty

mild. I'm the only one with PA, and I hope it stays that way.

Penny

> In a message dated 9/2/2003 12:54:10 PM Eastern Daylight Time,

> goat_46804@h... writes:

>

> > Interesting how genes work. I have a second cousing with PS,

but nobody

> > else in my family that I know of has it

>

> that is so interesting because there is no one in my family with

this except

> for a second cousin as well. It is my father's first cousin.

> Janet

[Guest guest]

Janet: I found out that intestinal inflammation is associate with Psoriatic

Arthritis first through one of the three rheumatologists I've seen several years

ago. Check out this Web site, http://www.niams.nih.gov/ne/press/1994/11_30.htm,

as well as the National Psoriasis Foundation Web site,

http://www.psoriasis.org/facts/psa/associated.php. I found out on the National

Psoriasis Foundation Web site that Crohn's disease is associate PA--of course,

it's treated much the same way as PA, so some of the same medications used to

treat PA are used to treat Crohn's disease. Unfortunately, with the intestine,

once a section is no longer functioning the only option is surgery for removal.

I hope this helps.

Take care,

Sally in Grass Valley

Re: [ ] Newly diagnosed...

In a message dated 9/2/2003 1:42:14 AM Eastern Daylight Time,

sallyking@... writes:

> intestinal inflammation (can be diagnosed as diverticulitis),

Sally,

I would like to know more about what you said here on diverticulits. I had

to have a foot of my colon taken out several years ago because the

diverticulitis was so inflamed and would not heal. This is the first time I

ever heard it

linked to psoriaisis. Can you tell me where you go this information because

I would like to read more about it and research it as well.

Janet

[Guest guest]

Hi Chris. Your story is just like mine. It started

with numbness and tingling in my pinky finger and ran

down the outside of my hand, though. Then came the

heel pain, then the wrists, and all the pain and

swelling in my joints were symmetrical. I had a

chronic sore throat and cough too, not strep just sore,

especially around the larynx. I know the difference

between the 2 because I was also plagued by strep.

After the birth of my daughter RA hit me full force and

left me completely crippled and very ill and deeply

depressed. I also got the nodules right away, and I've

read that the nodules were indications of a severe form

of RA.

The year or so of all these on and off again pains and

swelling I also had many bouts of strep in addition to

the sore throat and cough, I think it was 5 or 6. I've

had a battle with strep all my life. Here's the

kicker...I haven't had strep since the RA set in,

that's about 8 years now.

I'm convinced these auto-immune disorders are bacterial

or viral in nature.

you have a good chance of putting this into

remission through the Antibiotic Protocol (AP), because

it's so early in your diagnosis.

I wish I had this information when I first became ill.

If it were me I would get aggressive with AP now.

That's my opinion though.

Good luck and well wishes.

Kimmie

rheumatic Newly diagnosed...

> Hello everyone!

>

> My name is Chris(topher) and I have a few questions

> for those of you that have

> been dealing with rheumatoid diseases for a while.

> First let me give you my

> story (sorry if I sound like a gasbag here):

>

> About mid June this year I started to get heal pain

> in both my feet. I

> thought it odd but just attributed it to being a

> little overweight (20-30lbs)

> and recently being on my feet too much. The heal

> pain gradually got worse

> even though I was consciously trying to take it easy

> on my feet.

>

> I went on vacation with my family to my folks house

> in FL June 30th for ten

> days. Their house is all ceramic tile and I spent a

> great deal of time

> walking barefoot indoors and around the pool. This

> caused the heal pain to

> spread to the balls of my feet. While it wasn't

> unbearable, a couple motrin

> would ease it significantly, it was starting to

> become intense.

>

> I went back to work when we returned on July 10th and

> my feet quickly got

> worse. I developed significant swelling in my

> ankles, I couldn't walk on my

> feet at all without shoes, and my knees began to

> ache. I attributed the knee

> pain to me modifying the way I was walking, stressing

> my knees. Because of

> the knee pain I began having difficulty getting out

> of chairs, off the floor

> when sitting with my kids, etc., and would end up

> putting additional weight

> on my hands to lift myself up. So then my wrists and

> in particular my thumbs

> started to ache.

>

> Finally, about July 18th I broke down and went to our

> family practice. The

> Dr. there listened to my discription, ran his finger

> over the bottom of one

> foot, and promptly diagnosed it as Plantar Faciitis.

> Take 600mg of Ibuprofen

> as needed, not to exceed 1 every 8 hours, get some

> orthodic shoes and come

> see me in 3 weeks. I was relieved, because I thought

> maybe this was an

> indication of diabetes or something more significant

> than sore feet.

>

> So I got the shoes and started on a regime of 600mg

> Ibuprofen in the morning,

> followed by 2 to 3 doses of 200mg throughout the day

> . My conditions

> continued to worsen and by the 1st of Aug. I could

> barely get myself out of

> bed in the morning and had to slide down the stairs

> on my butt. My legs

> ached, particularly the knees just above the

> kneecaps. My wrists were

> killing me, at times feeling as if I had fractured

> them and all my fingers

> had begun to ache and swell. During this time I had

> also developed a cough

> that produced nothing, almost as if I had been around

> bad fumes that made my

> lungs uncomfortable. It was particularly bad when I

> would lay down. At this

> point I was taking 600mg 2 hours before work in the

> morning, somedays I could

> go in on time, somedays 4 hours late, some days not

> at all.

>

> I went back to my family practice on the 3rd, seeing

> a different Dr. this

> time. At the beginning of the Appt. he expected it

> to be a quick injection

> of corticosteroids, the previous Dr. apparently was

> dismissive of any of the

> other things I had described to him and only noted my

> heal pain. After

> explaining all that has gone on to this new doctor,

> he does a head to toe

> examination. Heart sounds clear, lungs clear,

> swelling in ankles and hands.

> I mentioned a small bump on the front of one leg that

> I could be a blood

> clot. He inspected my legs and found what he

> believed to be rheumatoid

> nodules on my lower legs, mostly on the back. Now I

> had noticed these

> before, small patches of swelling on the skin akin to

> a very minor bruise,

> which is what I assumed they were. They were not

> painful before this point,

> but after he poked and prodded at them they ached

> like the dickens later that

> evening. So he ordered a full blood workup,

> urinalysis and xrays of my

> ankles to see if the swelling was mechanical in

> nature.

>

> I returned to him 2 days later and recieved the

> results. Xrays of ankles were

> normal, outside of the swelling, Urinalysis was

> normal except for a slight

> elevated white blood cell count and 1+ protein, I had

> an RA factor of 35, and

> elevated platelet count of 560 if I recall correctly,

> slightly low red cell

> volume and a SED of 85, all else at or near normal.

> Basically, from what he

> told me, non-determinant of anything other than

> swelling which we already

> knew. He was a little concerned about the protein

> and made me do a 24 hour

> collection this past weekend which I haven't recieved

> the results from yet.

> He was dissmissive of the cough issue so I brought it

> up again as he was

> getting ready to wrap up. He had me do a chest Xray

> at that point, though I

> think he was just trying to placate me; I just wanted

> him to consider it in

> the context of everything else. I don't have the

> results of the chest Xray

> yet either, I expect to get the results when I return

> on Monday. The Dr.

> suggested taking that max course of ibuprofen. Since

> the appt., I have been

> following 600mg ibuprofen every 8 hours. My hands

> still ache and navigating

> stairs is quite difficult, but it is otherwise

> bearable, if not extremely

> irritating.

>

> ----

>

> So, after that long winded description, my questions

> are the following:

>

> How quickly did your condition develop? I can't find

> anything describing

> objectively the rate of progression of these

> conditions, but the inference

> that I have drawn is that they tend to develop more

> slowly than this. Though

> this is little more than a guess on my part.

>

> Have any of your Doctors suspected a bacterial

> infection when you were first

> diagnosed? I ask because I am extremely susceptable

> to Strep (at least once

> 8 of the last 10 years, multiple times several of

> those years), and my 2-1/2

> year old daughter just came down with strep after

> spending the majority of a

> day on my lap reading books and watching TV.

>

> Have any of you on the AP actually been able to

> determine the microorganism

> that has been triggering your condition, and if so,

> has streptococcus been

> among them?

>

> Finally, does anyone on the list have any experience

> with a condition called

> " erythema nodosum " and if so, would you be willing to

> share your story?

>

> I apologize for the length of this introductory

> email, but I'm a little

> unnerved by this potential diagnosis and would like

> to try to stop its

> progression as quickly as possible.

>

> Thanks,

>

> Chris

>

>

>

[Guest guest]

rheumatic Newly diagnosed...

>

>

>> Hello everyone!

>>

>> My name is Chris(topher) and I have a few questions

>> for those of you that have

>> been dealing with rheumatoid diseases for a while.

>> First let me give you my

>> story (sorry if I sound like a gasbag here):

>>

>> About mid June this year I started to get heal pain

>> in both my feet. I

>> thought it odd but just attributed it to being a

>> little overweight (20-30lbs)

>> and recently being on my feet too much. The heal

>> pain gradually got worse

>> even though I was consciously trying to take it easy

>> on my feet.

>>

>> I went on vacation with my family to my folks house

>> in FL June 30th for ten

>> days. Their house is all ceramic tile and I spent a

>> great deal of time

>> walking barefoot indoors and around the pool. This

>> caused the heal pain to

>> spread to the balls of my feet. While it wasn't

>> unbearable, a couple motrin

>> would ease it significantly, it was starting to

>> become intense.

>>

>> I went back to work when we returned on July 10th

>> and my feet quickly got

>> worse. I developed significant swelling in my

>> ankles, I couldn't walk on my

>> feet at all without shoes, and my knees began to

>> ache. I attributed the knee

>> pain to me modifying the way I was walking,

>> stressing my knees. Because of

>> the knee pain I began having difficulty getting out

>> of chairs, off the floor

>> when sitting with my kids, etc., and would end up

>> putting additional weight

>> on my hands to lift myself up. So then my wrists

>> and in particular my thumbs

>> started to ache.

>>

>> Finally, about July 18th I broke down and went to

>> our family practice. The

>> Dr. there listened to my discription, ran his finger

>> over the bottom of one

>> foot, and promptly diagnosed it as Plantar Faciitis.

>> Take 600mg of Ibuprofen

>> as needed, not to exceed 1 every 8 hours, get some

>> orthodic shoes and come

>> see me in 3 weeks. I was relieved, because I

>> thought maybe this was an

>> indication of diabetes or something more significant

>> than sore feet.

>>

>> So I got the shoes and started on a regime of 600mg

>> Ibuprofen in the morning,

>> followed by 2 to 3 doses of 200mg throughout the day

>> . My conditions

>> continued to worsen and by the 1st of Aug. I could

>> barely get myself out of

>> bed in the morning and had to slide down the stairs

>> on my butt. My legs

>> ached, particularly the knees just above the

>> kneecaps. My wrists were

>> killing me, at times feeling as if I had fractured

>> them and all my fingers

>> had begun to ache and swell. During this time I had

>> also developed a cough

>> that produced nothing, almost as if I had been

>> around bad fumes that made my

>> lungs uncomfortable. It was particularly bad when I

>> would lay down. At this

>> point I was taking 600mg 2 hours before work in the

>> morning, somedays I could

>> go in on time, somedays 4 hours late, some days not

>> at all.

>>

>> I went back to my family practice on the 3rd, seeing

>> a different Dr. this

>> time. At the beginning of the Appt. he expected it

>> to be a quick injection

>> of corticosteroids, the previous Dr. apparently was

>> dismissive of any of the

>> other things I had described to him and only noted

>> my heal pain. After

>> explaining all that has gone on to this new doctor,

>> he does a head to toe

>> examination. Heart sounds clear, lungs clear,

>> swelling in ankles and hands.

>> I mentioned a small bump on the front of one leg

>> that I could be a blood

>> clot. He inspected my legs and found what he

>> believed to be rheumatoid

>> nodules on my lower legs, mostly on the back. Now I

>> had noticed these

>> before, small patches of swelling on the skin akin

>> to a very minor bruise,

>> which is what I assumed they were. They were not

>> painful before this point,

>> but after he poked and prodded at them they ached

>> like the dickens later that

>> evening. So he ordered a full blood workup,

>> urinalysis and xrays of my

>> ankles to see if the swelling was mechanical in

>> nature.

>>

>> I returned to him 2 days later and recieved the

>> results. Xrays of ankles were

>> normal, outside of the swelling, Urinalysis was

>> normal except for a slight

>> elevated white blood cell count and 1+ protein, I

>> had an RA factor of 35, and

>> elevated platelet count of 560 if I recall

>> correctly, slightly low red cell

>> volume and a SED of 85, all else at or near normal.

>> Basically, from what he

>> told me, non-determinant of anything other than

>> swelling which we already

>> knew. He was a little concerned about the protein

>> and made me do a 24 hour

>> collection this past weekend which I haven't

>> recieved the results from yet.

>> He was dissmissive of the cough issue so I brought

>> it up again as he was

>> getting ready to wrap up. He had me do a chest Xray

>> at that point, though I

>> think he was just trying to placate me; I just

>> wanted him to consider it in

>> the context of everything else. I don't have the

>> results of the chest Xray

>> yet either, I expect to get the results when I

>> return on Monday. The Dr.

>> suggested taking that max course of ibuprofen.

>> Since the appt., I have been

>> following 600mg ibuprofen every 8 hours. My hands

>> still ache and navigating

>> stairs is quite difficult, but it is otherwise

>> bearable, if not extremely

>> irritating.

>>

>> ----

>>

>> So, after that long winded description, my questions

>> are the following:

>>

>> How quickly did your condition develop? I can't

>> find anything describing

>> objectively the rate of progression of these

>> conditions, but the inference

>> that I have drawn is that they tend to develop more

>> slowly than this. Though

>> this is little more than a guess on my part.

>>

>> Have any of your Doctors suspected a bacterial

>> infection when you were first

>> diagnosed? I ask because I am extremely susceptable

>> to Strep (at least once

>> 8 of the last 10 years, multiple times several of

>> those years), and my 2-1/2

>> year old daughter just came down with strep after

>> spending the majority of a

>> day on my lap reading books and watching TV.

>>

>> Have any of you on the AP actually been able to

>> determine the microorganism

>> that has been triggering your condition, and if so,

>> has streptococcus been

>> among them?

>>

>> Finally, does anyone on the list have any experience

>> with a condition called

>> " erythema nodosum " and if so, would you be willing

>> to share your story?

>>

>> I apologize for the length of this introductory

>> email, but I'm a little

>> unnerved by this potential diagnosis and would like

>> to try to stop its

>> progression as quickly as possible.

>>

>> Thanks,

>>

>> Chris

>>

>>

>>

[Guest guest]

.....To have swelling and pain continually moving to new joints

is very much a symptom of RA. My RA factor after eight years of the disease,

including fingers that after four years swiveled to the side(a major hallmark

of RA), never exceeded 30!! My daughter who has both hands, knees and feet

involvement, also tested sero-negative for RA although her GP realized that

many people with RA are negative in their bloodwork for several years.She was

diagnosed with RA inspite of no conclusive test and put on Minocin. Since

she was treated early she has done well and used a much lower dose that I did

to get in remission.

Get the book by Henry Scammell and read it cover to cover. I think you

will find your symptoms are quite familiar to RA patients. Remember there

are over 150 types of arthritis and few really 100% non fallible tests. Most

docs just make educated guesses. Fortunately most of these diseases respond

to the Minocin treatment. Martha

[Guest guest]

Hi Martha. With so many types I sometimes wonder about

my RA. I guess the nodules and the initial high

Rheumatoid factor says it.

An unusual thing though, the x-ray tech a few years ago

commented on the damage in my knuckles, but thought it

surprising that I don't have the " ulnar drift. " My

right toes piggy back just like RA should though.

Just makes me wonder. RA likes my ankles most of all.

I've often wondered why some joints are attacked more.

For me it's hands/wrist and feet/ankles. Now when it

hit me in the beginning it was in almost all joints.

Just seems to have settled in the feet and hands, but

like I said, it loves my ankles. Might have a better

flavor ) I know I like hamhocks, lol, can't eat them

though as pork makes me flare.

Kimmie

Re: rheumatic Newly diagnosed...

> .....To have swelling and pain continually

> moving to new joints

> is very much a symptom of RA. My RA factor after

> eight years of the disease,

> including fingers that after four years swiveled to

> the side(a major hallmark

> of RA), never exceeded 30!! My daughter who has both

> hands, knees and feet

> involvement, also tested sero-negative for RA

> although her GP realized that

> many people with RA are negative in their bloodwork

> for several years.She was

> diagnosed with RA inspite of no conclusive test and

> put on Minocin. Since

> she was treated early she has done well and used a

> much lower dose that I did

> to get in remission.

> Get the book by Henry Scammell and read it cover

> to cover. I think you

> will find your symptoms are quite familiar to RA

> patients. Remember there

> are over 150 types of arthritis and few really 100%

> non fallible tests. Most

> docs just make educated guesses. Fortunately most

> of these diseases respond

> to the Minocin treatment. Martha

>

>

>

[Guest guest]

Kimmie.... My brother-in-law has RA and it never got past the first joint

on all his fingers in both hands. The joints just below the fingernails. All

his fingertips swivel to the side but no where else on his hands or

knuckles. Also he has never had any other joints afflicted. He is also not

chronic,

but cycles on and off with weeks and sometimes months in between flairs of

the disease.

This is probably one of the reasons why this disease is so hard to diagnose.

Everyone seems to have different symptoms and although there are patterns,

there are lots of exceptions. That is perhaps a;lso why it is hard to

treat as each of us responds so differently to things. Just another reason to

learn all you can and take some control over what you want to do for

treatments. Martha

[Guest guest]

Hi Martha. Now that seems odd to me in that all I've

read concerning " typical " joints affected by RA, the

finger tip joints are rarely ever affected. According

to x-rays it doesn't appear that my finger tips have

been touched. Yeah, I agree, there seems to be

exceptions.

I have an aunt who says she has RA too and knows how I

feel. Both her pinky fingertips turn slightly inward,

and that's it. No other joints affected or pain. Of

course, as you might be thinking, she has NO idea how I

feel. These are the people that frustrate me, you

know, trying to make it look like your fussing over

nothing or exaggerating.

Anyhow, I've met so many people like that that I've

learned to pretty much ignore it.

Interesting how differently it affects each of us

though.

Kimmie

Re: rheumatic Newly diagnosed...

> Kimmie.... My brother-in-law has RA and it never got

> past the first joint

> on all his fingers in both hands. The joints just

> below the fingernails. All

> his fingertips swivel to the side but no where else

> on his hands or

> knuckles. Also he has never had any other joints

> afflicted. He is also not chronic,

> but cycles on and off with weeks and sometimes

> months in between flairs of

> the disease.

> This is probably one of the reasons why this disease

> is so hard to diagnose.

> Everyone seems to have different symptoms and

> although there are patterns,

> there are lots of exceptions. That is perhaps a;lso

> why it is hard to

> treat as each of us responds so differently to

> things. Just another reason to

> learn all you can and take some control over what you

> want to do for

> treatments. Martha

>

>

>

[Guest guest]

Hey, Chris!

Congratulations for " landing " in the best group you'll ever find! Get ready to

get better! :-)

I couldn't help but respond to your e-mail - I found so many similarities

between your story and mine. I'll add my 2 cents to snippets of yours below,

with mine in ALL CAPS (not that I'm shouting, it's just that my program displays

everyone's messages in the same font/color and your story would be hard to

disseminate from mine without my all caps. Anyway, here goes!

....Their house is all ceramic tile and I spent a great deal of time

walking barefoot indoors and around the pool. This caused the heal pain to

spread to the balls of my feet. While it wasn't unbearable, a couple motrin

would ease it significantly, it was starting to become intense. I CAN TOTALLY

RELATE TO THE CERAMIC TILE THING! MINE WAS DESCRIBED TO MY DOCS AS A " WALKING

ON COBBLESTONES " FEELING. FAST FORWARD 7 YEARS ON AP - I CAN WALK BAREFOOT ON

TILE, BUT MY FEET WILL BE HAPPIER IN MY SHOES, PREFERABLY CLARK'S BRAND. (I

THINK THEY COME IN MEN'S VERSIONS, TOO.) BY THE WAY, MY FEET WERE THE FIRST TO

" NOTICE " THE IMPROVEMENTS I WAS SOON TO EXPERIENCE ON THE AP. HANG IN THERE,

CHRIS :-)

....Because of the knee pain I began having difficulty getting out of chairs, off

the floor

when sitting with my kids, etc., and would end up putting additional weight

on my hands to lift myself up. So then my wrists and in particular my thumbs

started to ache. DITTO ON THE WRISTS, TOO! COULDN'T LIFT MYSELF UP USING MY

HANDS/WRISTS WITHOUT CAUSING MY WRISTS TO COMPLAIN - A LOT! AGAIN, THEY'RE NOT

COMPLAINING ANY MORE!

....at times feeling as if I had fractured them and all my fingers

had begun to ache and swell. MY HANDS ALWAYS FELT AS IF I HAD SLAMMED THEM DOWN

ON THE COUNTER TOP (WHICH I HADN'T) WITH THE REVERBERATING PAIN. (PAIN NO MORE

:-)

....During this time I had also developed a cough

that produced nothing, almost as if I had been around bad fumes that made my

lungs uncomfortable. MY COUGH HAS BEEN WITH ME SINCE DAY ONE OF THIS JOURNEY.

STARTED OUT AS A MINOR THING...QUICKLY (WITHIN A MONTH OR TWO) GREW INTO A MAJOR

ANNOYANCE, AND BY THE GRACE OF GOD AND WITH THE AP, IT IS NOW REDUCED TO A MINOR

REMINDER OF HOW BAD THINGS WERE. PLEASE READ MY STORY ON RHEUMATIC.ORG (CONNIE)

....He was dissmissive of the cough issue so I brought it up again as he was

getting ready to wrap up. He had me do a chest Xray at that point, though I

think he was just trying to placate me; I just wanted him to consider it in

the context of everything else. YOUR EXPERIENCES EXACTLY DUPLICATED MINE! DO

THEY NOT UNDERSTAND " COUGH " ?!!! EVEN DR. FRANCO, FOR WHOM I HAVE THE UTMOST

RESPECT, DIDN'T SEEM TO UNDERSTAND. MINOCIN ATTACKED PROBABLY 50% OF IT, WHICH

WAS DEFINITELY APPRECIATED. IT WAS NOT UNTIL THE ADDITION OF ZITHROMAX IN

ADDITION TO THE MINOCIN AND LATER, BIAXIN, THAT THE COUGH WAS " TAMED " ...I STILL

HAVE REMNANTS OF IT, AND IT IS STILL TRIGGERED BY A VARIETY OF THINGS, BUT FOR

THE MOST PART, I CAN NOW MESH WITH SOCIETY. IT WASN'T UNTIL YEARS AFTER MY

INITIAL DX OF DERMATOMYOSITIS THAT AN ENT SUGGESTED THAT I HAVE RELAPSING

POLYCHONDRITIS...ANOTHER RHEUMATIC DISEASE THAT WAS MORE RESPONSIBLE FOR THE

COUGH. TO ME, THE LABEL OR NAME(S) OF MY DISEASE(S)DOESN'T REALLY MATTER, FOR

THE AP HAS TAMED MY BEASTS. (NOTE: ADVIL AND EVEN PREDNISONE WILL STOP OR

REDUCE MY COUGH, BUT THESE THINGS ARE ONLY TEMPORARY FIXES WHICH HAVE MANY

UNWELCOME SIDE-EFFECTS. I CHOSE TO AVOID THEM FOR THE MOST PART, UNTIL THE AP

KICKED INTO GEAR, EXCEPT FOR ADVIL DURING THE FIRST FEW MONTHS OF AP AND

PREDNISONE TO COMPLETELY STOP MY COUGH FOR A FEW DAYS SO I COULD HEAL AFTER TWO

ABDOMINAL SURGERIES.)

The Dr.

suggested taking that max course of ibuprofen. Since the appt., I have been

following 600mg ibuprofen every 8 hours. My hands still ache and navigating

stairs is quite difficult, but it is otherwise bearable, if not extremely

irritating.

....How quickly did your condition develop? I'M SURE OTHERS WILL HAVE DIFFERING

EXPERIENCES, BUT MINE STARTED IN AUGUST OF '96. WITHIN TWO MONTHS MY COUGH WAS

A MAJOR SYMPTOM - 200 TIMES PER DAY, I FELT COLD TO THE BONE, EXTREME FATIGUE,

VARIOUS ACHES AND PAINS, BRAIN FOG, UTIs, ...AND THE LIST GOES ON.

Have any of your Doctors suspected a bacterial infection when you were first

diagnosed? NOT UNTIL A YEAR AND A HALF LATER WHEN I FIRST MET DR. FRANCO IN

RIVERSIDE, CA (WWW.THEARTHRITISCENTER.COM) UNTIL I MET DR. FRANCO I USED TO ASK

ALL MY OTHER DOCTORS, " WHAT DO A VERY ANNOYING COUGH, A URINARY TRACT INFECTION,

AND ARMS AND LEGS THAT " DON'T WORK " HAVE IN COMMON? " THEIR ANSWERS, " NOTHING "

(EXCEPT FOR MY VERY SPECIAL LOCAL INTERNIST...WHO SAID SHE DIDN'T KNOW, BUT KEPT

LOOKING FOR THE ANSWER TO MY PUZZLE.)

Have any of you on the AP actually been able to determine the microorganism

that has been triggering your condition, and if so, has streptococcus been

among them? NO...MY LOCAL INTERNIST STARTED ME ON THE AP A FEW MONTHS PRIOR TO

MY APPOINTMENT WITH DR. FRANCO, HENCE THE MYCOPLASMA TEST WAS INCONCLUSIVE.

Finally, does anyone on the list have any experience with a condition called

" erythema nodosum " and if so, would you be willing to share your story? NOPE,

SORRY. HAVE HAD VARIOUS RASHES WITH DM AND RP, THOUGH NOT TYPICAL OF ERYTHEMA

NODOSUM.

I apologize for the length of this introductory email, but I'm a little

unnerved by this potential diagnosis and would like to try to stop its

progression as quickly as possible. UNDERSTANDABLE. YOU'RE AT THE RIGHT PLACE,

CHRIS. JUST DO THE READING AT RHEUMATIC.ORG AND READ HENRY SCAMMELL'S BOOK, THE

NEW ARTHRITIS BREAKTHROUGH AND YOU'LL SOON FIND YOURSELF GETTING BETTER. JUST

REMEMBER TO PACE YOURSELF AND HAVE PATIENCE - YOU WON'T FIND A QUICK FIX IN THE

AP, BUT YOU'LL FIND A REAL FIX...CALL IT REMISSION OR CALL IT CURE, I'LL TAKE AP

OVER ANYTHING.

TAKE CARE,

~CONNIE

[Guest guest]

here...

Thank you, everyone, for your kind words of encouragement and wisdom, they are

VERY much appreciated. I will keep you posted on my progress.

-Chris

[Guest guest]

Kimmie...As with many chronic diseases, everyone is affected differently.

That does not mean there are not patterns that many follow. It just means

that not all people will fit the pattern perfectly.

I started out with pains in my neck and shoulder. Traveled down to my

hands and then my feet. Eventually my knees and elbows got involved. My

ankles were a bit stiff but never really hurt or were a bother. My daughter

only has it in the finger joints...not the lower knuckle joints.... and her

feet

and ankles. I have never had any pains at all in the spine or hips, yet

some people get it there too. Everyone is a bit different I guess. Just part

of

the uniqueness of each of our immune systems. So far yours has kept the

worst of the disease out of certain joints. Heres hoping the antibiotics

improve the rest!!! Martha

[Guest guest]

Hello - My name is Cheryl and I was dx in Nov 09 with accelerated phase CML -

Zavie has given me this site and promised it is the best there is...I am

currently on 800mg Gleevec but I will be starting Sprycel shortly as I am

getting a rash from the Gleevec - at dx my wbc were 39 and my blasts less than

1% - I was put on the Gleevec and Hydrea and after 1 week my wbc was down to 11

- the Hydrea was stopped and after 2 weeks my wbc was down to 2.7 and my blasts

were gone...my BMB showed 14% in the marrow and that is why my onc. has stated

that I am in accelerated phase...Zavie (and many others on another site) have

suggested I see a CML specialist and I will be asking for a referral to one

tomorrow at my dr's appt. My Onc. is pushing for a transplant and I'm not sure

that that is the way I want to proceed...my sister has been tested to see if she

can be a donor and we should find that out tomorrow as well...

So far I have found that many people are willing to share their experiences and

I am so grateful for that...it is good to know that so many people are

responding well to the drugs...I guess I would like to hear from someone else

who was diagnosed in accelerated phase and know how they are progressing on the

drug protocols now available..any of information or guidance would be

great...I've got so much to learn about this disease

Thanks!

Cheryl

[Guest guest]

Hi Cheryl: You will be glad you joined the group. You will get all the support

and answers to everything. This is a great group, and everyone cares for each

other. There is always someone to answer you, especially when your at your wits

end with decisions to make.

Glad your seeing a specialist. I myself have been on Gleevec since Oct. of

2000. You have some old timers to all this, and some others who are new like

you.

I went through all the testing back in 1998 because I had doctors pushing me

to go for a transplant. My brother and sister were not a match, then I was

advised by my doctor when I was in clinical trial for the Gleevec that I should

just do the Gleevec. He told me not to go with a unrelated donor. I did what

he told me, and here it is 2010.

Just check out all your possible choices before you decide on a transplant.

I wish you well on all your follow-ups to come to the right choice of

treatment. Try to remember that there is so much research and treatments that

were not here back when I was diagnosed.

Welcome

A.

>

> Hello - My name is Cheryl and I was dx in Nov 09 with accelerated phase CML -

Zavie has given me this site and promised it is the best there is...I am

currently on 800mg Gleevec but I will be starting Sprycel shortly as I am

getting a rash from the Gleevec - at dx my wbc were 39 and my blasts less than

1% - I was put on the Gleevec and Hydrea and after 1 week my wbc was down to 11

- the Hydrea was stopped and after 2 weeks my wbc was down to 2.7 and my blasts

were gone...my BMB showed 14% in the marrow and that is why my onc. has stated

that I am in accelerated phase...Zavie (and many others on another site) have

suggested I see a CML specialist and I will be asking for a referral to one

tomorrow at my dr's appt. My Onc. is pushing for a transplant and I'm not sure

that that is the way I want to proceed...my sister has been tested to see if she

can be a donor and we should find that out tomorrow as well...

>

> So far I have found that many people are willing to share their experiences

and I am so grateful for that...it is good to know that so many people are

responding well to the drugs...I guess I would like to hear from someone else

who was diagnosed in accelerated phase and know how they are progressing on the

drug protocols now available..any of information or guidance would be

great...I've got so much to learn about this disease

>

> Thanks!

>

> Cheryl

>

[Guest guest]

Hi Cheryl,

Welcome to the group. It seems that there was a huge discrepancy between your

blood blasts and your marrow blasts. I wonder if they looked at a big enough

smear when calculating the two samples.

In the old days, blasts over 5% were considered accelerated phase but that

changed in the last several years where now they only consider blasts over 15%

to be accelerated. You're right on that cusp according to the marrow sample

they looked at but far below according the peripheral blood sample.

Did you have any other signs of acceleration such as enlarged spleen, high

platelets, high basophils or physical symptoms such as weight loss, fevers, etc?

Given your unusual lab findings, I would also suggest that you see a specialist.

It would be good to know where you started as that will determine your overall

risk.

Tracey

dx Jan 2002

>

> Hello - My name is Cheryl and I was dx in Nov 09 with accelerated phase CML -

Zavie has given me this site and promised it is the best there is...I am

currently on 800mg Gleevec but I will be starting Sprycel shortly as I am

getting a rash from the Gleevec - at dx my wbc were 39 and my blasts less than

1% - I was put on the Gleevec and Hydrea and after 1 week my wbc was down to 11

- the Hydrea was stopped and after 2 weeks my wbc was down to 2.7 and my blasts

were gone...my BMB showed 14% in the marrow and that is why my onc. has stated

that I am in accelerated phase...Zavie (and many others on another site) have

suggested I see a CML specialist and I will be asking for a referral to one

tomorrow at my dr's appt. My Onc. is pushing for a transplant and I'm not sure

that that is the way I want to proceed...my sister has been tested to see if she

can be a donor and we should find that out tomorrow as well...

>

> So far I have found that many people are willing to share their experiences

and I am so grateful for that...it is good to know that so many people are

responding well to the drugs...I guess I would like to hear from someone else

who was diagnosed in accelerated phase and know how they are progressing on the

drug protocols now available..any of information or guidance would be

great...I've got so much to learn about this disease

>

> Thanks!

>

> Cheryl

>

[Guest guest]

Tracey...

I really didn't have any symptoms that I can attribute...they found this during

my routine physical...the only symptom I had of the typical ones is night

sweats..and I was under the impression that it was because I was

pre-menapausal...I went for a physical because I didn't get my period for 3

months and wanted to know why...so needles to say this has really come as a

shock...I'm not sure if my spleen is englarged because they haven't done an

" exam " of that nature yet...however it must not be because during my physical my

family doctor would have caught it because he palpated my abdomen...I get some

weird twitching pains now under my left ribcage so maybe that is starting...but

my Onc. has not physically checked me out yet...only done bloodwork, bmb,

echo-cardiogram and pulmonary function tests...I certainly have not lost any

weight...and so far no fevers

> >

> > Hello - My name is Cheryl and I was dx in Nov 09 with accelerated phase CML

- Zavie has given me this site and promised it is the best there is...I

am currently on 800mg Gleevec but I will be starting Sprycel shortly as I am

getting a rash from the Gleevec - at dx my wbc were 39 and my blasts less than

1% - I was put on the Gleevec and Hydrea and after 1 week my wbc was down to 11

- the Hydrea was stopped and after 2 weeks my wbc was down to 2.7 and my blasts

were gone...my BMB showed 14% in the marrow and that is why my onc. has stated

that I am in accelerated phase...Zavie (and many others on another site) have

suggested I see a CML specialist and I will be asking for a referral to one

tomorrow at my dr's appt. My Onc. is pushing for a transplant and I'm not sure

that that is the way I want to proceed...my sister has been tested to see if she

can be a donor and we should find that out tomorrow as well...

> >

> > So far I have found that many people are willing to share their experiences

and I am so grateful for that...it is good to know that so many people are

responding well to the drugs...I guess I would like to hear from someone else

who was diagnosed in accelerated phase and know how they are progressing on the

drug protocols now available..any of information or guidance would be

great...I've got so much to learn about this disease

> >

> > Thanks!

> >

> > Cheryl

> >

>

[Guest guest]

Hi Cheryl,

I'm really surprised that your onc hasn't checked your spleen or checked any of

your body for that matter. One of the first things I got at diagnosis besides a

BMB was a physical exam and an ultrasound of my spleen.

Now I really think you should get another opinion. Oncologists get paid a

handsome fee for consulting with a new patient and part of that consult should

include a physical exam.....palpating the spleen, listening to the heart, taking

a pulse, feeling for enlarged lymph nodes, checking for swelling around the

ankles etc.

Tracey

> > >

> > > Hello - My name is Cheryl and I was dx in Nov 09 with accelerated phase

CML - Zavie has given me this site and promised it is the best there

is...I am currently on 800mg Gleevec but I will be starting Sprycel shortly as I

am getting a rash from the Gleevec - at dx my wbc were 39 and my blasts less

than 1% - I was put on the Gleevec and Hydrea and after 1 week my wbc was down

to 11 - the Hydrea was stopped and after 2 weeks my wbc was down to 2.7 and my

blasts were gone...my BMB showed 14% in the marrow and that is why my onc. has

stated that I am in accelerated phase...Zavie (and many others on another site)

have suggested I see a CML specialist and I will be asking for a referral to one

tomorrow at my dr's appt. My Onc. is pushing for a transplant and I'm not sure

that that is the way I want to proceed...my sister has been tested to see if she

can be a donor and we should find that out tomorrow as well...

> > >

> > > So far I have found that many people are willing to share their

experiences and I am so grateful for that...it is good to know that so many

people are responding well to the drugs...I guess I would like to hear from

someone else who was diagnosed in accelerated phase and know how they are

progressing on the drug protocols now available..any of information or guidance

would be great...I've got so much to learn about this disease

> > >

> > > Thanks!

> > >

> > > Cheryl

> > >

> >

>